Lysogene is at the forefront of rare disease policy. The rare disease environment encourages people to exchange ideas, to seek challenges, and to achieve their personal goals. Small patient numbers and the heterogeneity of rare diseases, combined with a lack of knowledge, information and training about these conditions can result in delays in correct diagnosis, care and treatment.
At Lysogene we share our experience to help further research into rare diseases and improve public health globally. Lysogene is a member of:
We also have many advisory and speaking roles at international or national policy and scientific meetings.